The report into Connor’s death and subsequent commentary on it has seen my twitter feed alight with anger and condemnation and rightly so. #justiceforLB has been buzzing. The power of social media has been amazing in giving people a voice and publicizing the worst practice in the care and support of people with learning disabilities.

The Trust responsible for this has demonstrated every possible way to get things wrong, including the way to treat families, culminating today with a CEO finally coming forward to speak on local radio. Actually, there really is nothing she could have said that would have helped Connor’s family at this time. IT’S TOO LATE! …I won’t go into details so read an excellent blog that sums it all up here from Rich Watts

Sara Ryan, Connor’s Mum, spelt out a few weeks ago what should have happened in her blog post Imagine ….If only. How different this would have been. How much better for everyone if even a shred of compassion and understanding had been shown from the outset… And, whilst it would never have taken away the utter devastation that Connors death has brought his family it would have a least spared them the further, brutal pain they have had to endure at the hands of the Trust in the last eight months. Unforgivable!!

Although this has been all consuming and distressing in the back of my mind (but not very far back) is the knock on affect this will have for families already fearful for their relatives with learning disabilities futures. The possible assumptions that will be made that ALL care or support for people with learning disabilities is this bad. That all providers of support are this poor and this uncaring. As someone who works for one provider organisation and who’s son receives support from another, I know this isn’t the case. I know there is some real quality out there. I know there are organisations that appreciate and value working with families and that whilst they don’t always get it right on the ground they are damn well trying to lead from the top…and working hard to change historical cultures and values (not as easy as it appears)

I work with lots of families, those who have kids moving into adulthood or who have relatives already being supported outside the family home and I worry what this must be doing to them….because there is always a danger when we talk about services and support for people with learning disabilities that we lump all services together!

I said it was a week of contrasts and so here’s the contrast. here’s what “good” can look like

Today I went to G’s annual review. As I was driving there I was wondering whether it was actually needed, so in touch and involved with everything they do (and G does) am I that barely a couple of days go by that I don’t hear from his support staff or management. There’s regular communication via phone calls and emails, telling me what he’s doing or reporting on health or other issues. We have regular house meetings with the staff team and senior management …actually we had one at the beginning of this week that had already enabled me to chat to the manager and the area manager. However, it was good to go and important to properly review his support.

I was welcomed into G’s home in the usual friendly way I‘m always made welcome. Offered a cuppa and then chatted with some of the support staff before the area manager arrived.

G wasn’t there. We made a decision that it’s best that he isn’t sometime ago because he gets upset if I arrive and don’t take him back home to my house (he’s a “grass is always greener” kind of chap and likes his routine) so, although I wish he was part of it we are trying to be person centred about this and think about this from his perspective. The staff had printed off some lovely collages of photos so he had a presence (sort of)

Of course the focus of the review was all about him. We talked about what was important to him, the activities he was doing, what was working/not working etc. It wasn’t the person centred format with paper on the walls, around the room but it was definitely (G) person centred.

We chatted about recent health issues, one of which is baffling us all but, I’m happy that we’re all working together to work out what’s going on and trips to the doctor and dentist have been done already or planned and we’ve been in regular touch about this throughout.

We talked about a planned holiday to the Calvert Trust…everyone’s really excited about this because they’ve kind of done Butlins a bit too much of late and they all need a change (even though G loves it) we talked about staffing levels for this, the kind of activities the young people would enjoy and how much they were all looking forward to doing something new.

The staff team have a great relationship with G, it’s obvious they know him really well and love spending time with him. He obviously likes them too. I’ve always been able to tell when people really like him because they smile and laugh when they talk about him (something about the eyes not just the words they use) They totally “get” him, understand what makes him tick, understand what he’s communicating and know how to get the best from him, with him and for him.

So why does this work so well for G and why do some other services or support for people with learning disabilities fail so badly?

Well it’s not difficult really…

It’s about good relationships – it’s about partnership -working closely with families, as partners and part of the team who support their relative.

Never, at anytime in working with G’s provider have I felt that I’m not now important because he’s an adult. Never have they questioned my love for him or my involvement…in fact it’s been the opposite, they’ve welcomed and valued it. They recognised right from the start that when your child becomes an adult (whether they have learning disabilities or not) families are important. After all, my 25 year old and 21 year old daughters still ring me when they need help or advice, still want my support…that’s called being a family!

It’s about honest, open and regular communication…only by this can you ever begin to build real trust and develop mutual respect.

It’s about treating the people you support with dignity and respect (as you’d like to be treated yourself) It’s about seeing them in the same way as you see yourself and anyone else. It’s about valuing people!

When things have gone wrong in the past (which they inevitably do) G’s Support Provider have been quick to put it right and inform and involve me/us every step of the way. Phone calls to tell us what they are doing and why.

Almost 5 years ago, within the first month of moving into his new home a member of staff was suspended, pending an investigation (we were informed that very day). Having all been involved in his recruitment we were all a bit shocked by this and concerned because the move was very recent (and we were obviously all still a bit nervous because of this) All was explained, from the circumstances and events that led to the suspension to the procedure that would now take place. Regular contact was made to keep us up to date and informed about progress. We couldn’t have asked for more than that!…openness, honesty and regular communication .

I’m also recalling a story I heard some time ago when I was working with Contact a Family around parent participation. At one of the regional events I’d arranged, the head of Children’s Social Care, from one the areas I was covering, spoke about the very first meeting he went to with parents of disabled children. The topic of transport came up (a typical issue then and now!) He said all the parents were angry and gave him a really hard time but he said it was his job to listen and to “take it on the chin and suck it up”. He appreciated their anger, they had a right to be angry and although he wasn’t personally responsible he never defended himself and was honest about the situation. The parents valued this (some of them were at this event too) and he met with them regularly to keep them informed and work out solutions. After all, people like him are paid well for what they do and with reward comes responsibility and accountability.

This is all a far cry from the response from Southern Health NHS Trust. They couldn’t have got this more wrong if they’d tried. No taking it on the chin and sucking it up, No accountability, no communication, except to defend and bully. NO HONESTY! ….Even today there were anomalies in accounts of initial responses and actions taken at the time…just when you thought they couldn’t get things any more wrong!

How can anyone ever trust this Trust again? How do we ever undo the untold damage that this has done to other support providers and organisations who are trying to build confidence and trust with families? More importantly perhaps, how do we even begin to reassure families that their son or daughter can have a good life as an adult?

I hope this blog post has gone some way to show what good could and should look like…and I hope this is not the exception and becomes the norm!

N.B. In no way is this post a criticism of some of the good, honest individuals working for Southern Health. I know some of them….and they really are.

4 Responses to Openness, Honesty, Respect and Valuing People: What “good” can look like

You have got it so right Gail. However I think families can have more confidence in services they are involved with when it is more long term placement. There is a need to buikd a ling term relationship and families have time to scrutinise and make judgements about the standard of care being provided. I think a key factor that makes the provision at the unit (that so badly failed Connor and Sara and family) different is that its function was to be a short term assessment and treatment unit. They were meant to be providing expertise that the rest of us caring for and working with Connor didnt have. The unit was not a long term placement – all working with Connor at time of his admission put faith in them being a specialist unit which would identify causes and provide support to him at a time of crisis in terms of his mental health. This was their first failure as they never provided any expert opinion on what was happening to Connor, nor possible causes and therefore no way to move forward. We were all duped.
That being the case with Connor it is not surprising so many other adults with learning difficulty find themselves stuck there with nothing happening.

Yes I agree Sally. There is a big difference between the kind of support and relationship we have when it’s more long term. However we know only too well from Winterbourne that families don’t always distinguish between the two types of provision. And the sad fact is that some providers still have a ‘he’s an adult now, we’ll take it from here” approach. Families seen as ‘over protective and not ‘letting go’ or letting them grow up. When the reality is no mother ever really lets go of any child however old they are and whether they have LD or not. We are continually judged for our responses in a way others families aren’t… Needs a lot of work really and it’s tough to build confidence in any support service in the current climate….blimey this is beginning to look like another blog! 😉 x

I wouldn’t excuse Winterbourne or STATT for the way they treated, or rather mistreated, the young people in their care, and their lack of respect for parents/family members but it is a fine line to get right in terms of giving older teenagers and adults with ld their voice while still accepting that parents should have their input too in decisions as the know their child – and no matter how old we are, as you say with or without ld, we are still our parents’ children! While its hard to get it 100% right there is no doubt it is done better by many than it was at STATT.